Some of you have posted on the board asking about medication that may help with Shy Bowel. This is a big subject to talk about; here are some of my thoughts on it:

Firstly, a technical point: each pharmaceutical drug has a chemical name (no capital letter at the beginning) and also has a brand name (which does have a capital letter at the beginning). In different countries the brand name is often different. This can be confusing when you’re talking across continents (as we are on this message board). Wikipedia is a useful tool for getting and clarifying the different names if you’re confused.

Please be aware that I am not a medical pracitioner or health professional. What follows are my own conclusions and insights into medication for Shy Bowel based on my own experience, the experience of others, and information picked up along the way.

Before going into the potential problems of drugs like Seroxat, it's important to note that drugs like these do and have helped a percentage of people and have saved lives along the way or given people back their quality of life. To try and paint a drug like this as either all good or all bad is to fall into the trap of black and white thinking, distorts reality, and gets in the way of good decision making.

If you go to your doctor and ask for medication that may help with your Shy Bowel, they are most likely to prescribe an SSRI anti-depressant or similar. Most probably they’ll suggest one of the following: paroxetine (Seroxat, Paxil), citalopram (Cipramil, Celexa), escitalopram (Cipralex, Lexapro), or venlafaxine (Effexor, Efexor, Alventa, Argofan, Trevilor).

Here it’s important to stress that when a doctor suggests or prescribes a drug, you don’t have to immediately say yes. (This is kind of obvious, but we’re conditioned to hand over responsibility to doctors.) You can thank them for their suggestion(s) and say you need some time to weigh up whether it’s right for you. Why do this? Simply because it’s a big decision and it’s one that will affect you for better… or for worse. For a sizeable percentage of people, these are not the kind of drugs you can easily come off once you’re on them, and they can produce debilitating side effects when you’re on them. When my doctor said to me, “Don’t worry about the bad press that Seroxat has been getting, it’s still a damn fine drug”, I trusted him and gave over all responsibility to him. In hindsight I wish I had done my own research before making the decision to go on it. Anti-depressants and other psychiatric drugs are powerful things – even if they are handed out like candy by a lot of doctors. Take responsibility for yourself and do your own research getting information from a variety of sources.

One source of information is of course your doctor, who in turn will get his/her information from conclusions and reports based on clinical drug trials. You can also go to your chemist and ask for the data sheet on a drug so that you can find out more detailed info (though I’ve found these to be lacking in detail compared to the drug leaflet that accompanies the actual drug so try and get a copy of this). (Be aware that you need to read between the lines. For example the Seroxat data sheet says impairment of sex drive or sexual function (such as anorgasma: the inability to achieve climax and therefore in the long run the inability to find sex satisfying) is a side effect of the drug affecting more than 1 in 10 people. Which doesn’t make clear the actual percentages. Anecdotal evidence suggests this particular side effect is 70% likely to be present. Likewise, claims that a drug is not addictive are using the medical understanding of the term, not the lay person’s understanding.) At this point you may ask, “Why not just accept your doctor’s advice and the pharmaceutical companies’ clinical trials evidence?”

Well, drug companies like any other big businesses in a free market economy need to make a profit to survive in a ruthlessly competitive world. They have shareholders to answer to if they don’t, and they risk going under if they’re not constantly looking to increase or maintain their market share.

Anti-depressants are a multi-billion dollar business so there’s a lot at stake. A company may, as a result, suppress negative results from trials (partly or fully) so as to give the drug a better ‘profile’ in medical and marketing circles, especially when they’re launching a new product.

Secondly, clinical trials usually involve comparing the efficacy of a drug against a placebo in a double blind setting. But, as Tyrrell and Griffin note in their book ‘How to lift depression fast’: “Just as there are legal loopholes for avoiding payment of the due amount of tax, so there are legal ways of manipulating the placebo effect to make a drug look more effective than it really is.” Likewise there are ways of improving the ‘profile’ of a drug by manipulating data from trials to show that the drug has smaller likelihood of side effects and withdrawal problems. The icing on the cake with is that all of this is then presented as hard scientific, objective evidence.

On top of this, clinical trials are not the same thing as taking the drug for several years. Ultimately, the users of the drug are the real life guinea pigs for long-term use of a drug.

“Let Them Eat Prozac: The Unhealthy Relationship Between the Pharmaceutical Industry and Depression”, “Toxic Psychiatry” and “Your Drug may be your Problem” to name just a few books on this subject (all of these written by psychiatrists) give you a flavour of the down side of taking psychiatric drugs, pharmaceutical companies, and the inefficacy of the medical regulatory bodies.

Panorama – a well respected investigative series in the UK – has done three programmes on Seroxat and problems associated with it. The first was called ‘The dark side of Seroxat’, the second (made as a result of massive viewer response to the first programme) was called ‘Seroxat: emails from the edge’. The third one was called ‘Seroxat: Taken on Trust’ I can’t locate the first two on the net but here’s a link to the third one (it appears in seven segments, so at the end of the first segment you then have to click on Part 2, and so on). I highly recommend watching it if you’re thinking of taking Seroxat (or similar) for Shy Bowel:

So, where else can you find out information? Well there are anecdotal sources (people taking the drug in real life and reporting on how it affected them). If you want to find out this kind of information a good google search is putting the drug name plus words like ‘withdrawal’, or ‘side effects’ or ‘user’ in. Look through a number of different forums (and not just the ones that come out at the top of the google search). Look for people’s experience who have been on it longer term or tried to come off it.

Slowly you’ll begin building up a composite picture of a drug from many different sources. The ‘truth’ about a psychiatric drug is going to be somewhere between the polarities, and where exactly this is, you’ll have to gauge for yourself. Two key things to research are ‘nature and likelihood of side effects’, and ‘ease/difficulty of withdrawal’.

Once you’ve done your research for the various different drugs being suggested by your doctor (or from ones you’ve researched), you’re in a better position to make a wiser, more informed choice about which to try (or to avoid). Ultimately it will a risk/benefit assessment that you need to make.

Of the anti-depressants listed at the beginning of this post, here’s what I’ve found out off my own bat: Seroxat is the most complained about anti-depressant on the market. I know some doctors who will no longer prescribe it because of the side effects and withdrawal problems of this drug. Effexor, according to a local charity I talked to (who help people coming off difficult drugs such as tranquillisers and ssri’s), is as bad if not worse than Seroxat in these terms. Cipralex, is the product of ‘ever-greening’ – a process whereby, when the patent has expired on their original drug, a pharmaceutical company creates a new drug very similar to the old one, molecularly, so that they can then patent it and have a monopoly on it. It may or may not be an improvement on the old drug.

All anti-depressants as far as I am aware do not cure depression, or social anxiety disorders (such as Shy Bowel). They can suppress the symptoms but they will probably bring their own side effects. This was my experience of taking Seroxat. It helped with the Shy Bowel, but brought with it debilitating side effects, and once I tried to come off it, symptoms returned with a vengeance, and I experienced things getting a lot worse than before going on the drug (such as suicidal thoughts, aggression, mood instability).

If you are taking anti-depressants or are about to start taking them, my advice (gleaned from other people's and my own experience) is, “Don’t play around with the dosage once you’ve established the right dose for you. Once you’re on them, stay on them. The whole concept of taking them for six months and then coming off them just doesn’t work with something like Shy Bowel and these drugs. If, at some point in time, you wish to come off the drug (perhaps because the side effects are intolerable), come off the drug very very slowly. I’m always astounded now by the advice that you can just start dropping the dose at regular intervals and taper off completely over a few months. (My personal opinion is that the reality of how difficult these drugs can be to come off has not yet been incorporated into medical advice fully.) The best approach I’ve come across so far has been to get your anti-depressant in liquid form, get a dropper from your chemist, work out how many drops make up your current dosage, and then reduce your dose by one drop. Leave it for a couple of weeks, review how you’re doing, and then either reduce the dosage by a further one drop, or remain on the same dose if you don’t feel ready to drop down again. These are powerful drugs which cause a wide array of withdrawal symptoms, so why hurry coming off them?

It is important to make sure you are being monitored whilst first going on one of these drugs, or changing dose, or coming off them. This can be difficult to arrange. (If you do start spiralling down, it's difficult to start making appointments to see your doctor. if you need to ring them and say it's urgent then do so).

I don’t feel comfortable detailing my own struggles and odyssey with these drugs. Suffice to say, if I could do it again, I think I would have avoided them. I’m now in the situation where I’ve been given another anti-depressant (Zispin) to help me come off Seroxat. But this didn’t help and if anything made the situation worse. After then struggling to get to see a psychiatrist, I was prescribed another drug as a mood stabilizer (Lamotrigine) to help me come off seroxat, but I find myself utterly debilitated by this cocktail and in a very difficult place (understatement). If I could do it again I would have first tried natural anti-depressants such as St John’s Wort or Rhodiola Rosea. Why? Simply because these drugs have a much longer track record and don’t have any of the corporate patents and ruthless marketing associated with them. Be aware though that these are also powerful natural drugs. (Arsenic is natural but that doesn’t mean it’s not lethal.) So they should be used wisely (don’t stop taking them abruptly, keep on a stable dosage once you’ve found the right level for you, etc). Treat them as a serious medication, not just some supplement that you take for a bit then forget about, then start taking again. Also, do your research into good brands and levels of active compounds. Because there is less regulation about natural drugs the responsibility lies completely with you to make sure you’re taking the right product. The problem of going down the pharmaceutical route is that these natural options then become off limits because of contraindications.

It would be great if there was a pill you could take to make Shy Bowel go away, and for it not to have any side effects or withdrawal effects. This just isn’t the case yet. Hopefully, this post will give you a ‘heads up’ on taking medication for Shy Bowel. Ultimately, you will need to do your own research, and make your own choice whether to use drugs or not. I hope that some of the ideas here will help you to make a better informed and wiser choice. Shy Bowel, as you well know, is debilitating. Drugs are an appealing option but they can – and do - bite you in the ass.

If you are already on anti-depressants or other medication, it would be great to hear your story whether your experience has been good or bad. You can’t respond to this post but you can start a new thread on the board. The more people post about their experiences with meds, the better people will be informed to make a decision regarding taking them or not (and on good practice taking them or coming off them).

Finally, if you’re already on one of these drugs and this post has made you think twice about staying on them, DO NOT COME OFF THEM ABRUPTLY. Think very carefully about when is a good time to off them, or whether you need to stay on them. Once you come off them, even if you decide to go back on them, I’ve come across a number of reports that they don’t work nearly as well second time round (but you’re still stuck with the side effects and/or withdrawal symptoms).